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Just diagnosed Pure Embryonal Carcinoma

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  • Just diagnosed Pure Embryonal Carcinoma

    Hello, my name is Ben, I'm from Southaven, MS (in the greater Memphis, TN area). I've been recently diagnosed with Pure Embryonal Carcinoma. I have scanned these forums the past week and decided to post in hopes to clear my mind and stay focused. I'll go ahead and give the run down:

    Around 9/6/2017--Noticed lump on left testicle
    9/18/2017--Scheduled an appointment to see urologist, noticing some aching
    9/25/2017--Met with urologist, he felt the testicles and noticed I was more tender on the left side, he wanted to rule out infection, went to get a scrotal ultrasound same afternoon and confirmed mass. Urologist says it's a tumor and we'll need to get it out as soon as possible.
    9/28/2017--Performed Orchiectomy on Left Testicle, sent off to pathology
    10/5/2017--Followed up with urologist and did CT scan, urologist said CT scan looks good, he said he'll have the radiologist look over it with a fine tooth comb, diagnosed with stage II Pure Embryonal Carcinoma, 40 to 50% chance of recurrence. He referred me to an oncologist at the West Clinic, appointment with the Oncologist is on 10/16/2017.

    Results from Pathology

    -Histologic type: Pure Embryonal Carcinoma
    -Tumor size: 3.0 X 2.5 X 2.5 cm
    -Extent: Focal extension into hilar adipose tissue
    -Surgical Margins: Negative for tumor
    -Lymphovascular invasion: Present
    -Germ cell neoplasia in-situ (GCNIS): Present
    -Rete testis involvement: Absent
    -Necrosis: Present
    -Tumor focality: Unifocal
    -Pathologic stage: pT2 Nx Mx S0
    -Focal sertoli cell nodule adjacent to tumor
    -Additional pathologic findings: Epididymal cyst. Unremarkable spermatic cord.
    -Serum tumor markers are reported to be within normal limits (HCG <1, AFP 5.7)


    My mind has been all over the place these past two weeks. I'm 32 years old, married with 2 children, ages 3 and 1. I just can't imagine leaving my family like this. I've radically changed my diet, cutting out refined sugars, eating much more raw vegetables to the point where it's detoxing my liver. I've been taking supplements to better myself and exercising every day to better myself. I am overweight. I've been feeling out of control and my wife does a good job to stay focused saying this cancer is highly treatable/curable. I've read into the treatment options for this type, surveillance, chemo, or RPLND. RPLND scares me, chemo I'm worried about the long term side affects, possible second cancers. I'm wondering what questions I need to prepare myself with, when I go see the oncologist. Also, we have a family vacation to Disney World coming up from 10/28 to 11/5, that we have been planning for a year and a half, I'm not sure how this will play out after meeting with the oncologist.

    Thanks,

    Ben

  • #2
    Sorry you're in need of this forum Ben but welcome nonetheless. TC is an overwhelming and terrifying diagnosis but you WILL get a handle on it. It's completely normal to be reeling right now as your brain wraps around your new reality. You need time to appreciate the great things on your side (2 children already!!) and make your game plan. You've already taken steps to improve your health and you seem quite educated about your situation. Put together the best possible team for your care and always be your own advocate. Disney will most likely have to wait as you will probably be starting chemo asap. Can't imagine you'd enjoy it knowing what faces you when you return and truthfully, 1 and 3 year olds won't remember the trip anyway! Your life has taken a detour but TC IS curable!!!! Ask for, and accept, support, especially child care. Your focus right now is to get better but give yourself time to process it all. Much love to you!

    Comment


    • #3
      Sorry to welcome you. If you're CT is normal, then you are stage I, not stage II. You have the choice of surveillance, 1 x BEP, and RPLND. I would personally do RPLND in your situation.
      Diagnosed at age 31. Treated in NYC. Now living in Ottawa, ON, Canada.

      7/1/2015: felt tiny lump on side of R testicle
      7/30/2015: Ultrasound shows 2 intra-testicular masses.
      7/31/2015: tumor markers normal, CXR clear
      8/5/2015: R orchiectomy
      8/11/2015: Pathology: 1.2 x 1.0 x 1.0 cm, embryonal 80%, seminoma 20%, with LVI and rete testis invasion
      8/14/2015: CT abdomen/pelvis clear, Stage 1b
      8/24/2015: started 1 x BEP

      Comment


      • #4
        Sorry to welcome you to the Pure EC club.

        Don't worry about the side effect of chemo, the adjuvant chemo only have short term side effect. In my experience, the side effect has gone after 1 month. When I did the BEP chemo, I just feel like Gastroenteritis, it was not too bad.

        Personally I would recommend you to do Surveillance or Adjuvant Chemo (1 or 2 cycle of BEP). As I remember that pure EC can skip the lymph, RPLND is not recommended.



        If you are stage I, the relapse rate was 20%. If you are stage II, the relapse rate will come up to 40%. (I was stageI before, I chose Surveillance. I did the blood test every month. When I relapsed, I start the BEP chemo after 2 weeks. Surveillance did a good job)



        30/12/16 2.5cm on right testis, 6mm on left testis.( B-HCG 0.34 <2,AFP 4.5 <7)

        24/01/17 Right I/O
        (Pure embryonal carcinoma, no lymphovascular, no invasion of tunica albuginea, rate testis, epididymis, spermatic cord. )

        14/02/17 AFP 2<7, 6mm on left testis
        17/02/17 Survelliance
        06/03/17 CT scan (Visible lymph nodes in the mediastinum . probable benign reactive appearance)

        28/07/17 AFP 35 (normal 7), relapsed confirmed
        04/08/17 CT scan (new metastatic para-aortic lymph node 1.6cm AP1.5cm)
        10/08/17 Start 3 BEP, AFP201 (normal 7)
        06/10/17 End of 3 BEP, AFP2 (normal7)
        17/10/17 CT scan

        Comment


        • #5
          Thank you for the responses. I called the urologist's office today to see if the radiologist signed off on the CT scan. The notes said that they didn't see anything cancerous, then the nurse said they made a note about a 3mm pulmonary nodule in the left lung. The nurse said pulmonary nodules are common and can be from the air we breath. But my case with EC could be different, I have been noticing shortness of breath a starting couple of days ago. Should I be worried?

          Comment


          • #6
            I know someone who has pure EC and spread to the lung. He said that his lung was painful and CT scan show multiple nodes on his lung.
            If you lung feel painful, you probably need to worry. I am not sure with shortness of breath.

            I understand that it is quite worrying, we cannot control everything, but we can made a plan to prepare for the best. I would recommend you to arrange monthly blood test (B-HCG, AFP, LDH) and book the next CT scan.
            30/12/16 2.5cm on right testis, 6mm on left testis.( B-HCG 0.34 <2,AFP 4.5 <7)

            24/01/17 Right I/O
            (Pure embryonal carcinoma, no lymphovascular, no invasion of tunica albuginea, rate testis, epididymis, spermatic cord. )

            14/02/17 AFP 2<7, 6mm on left testis
            17/02/17 Survelliance
            06/03/17 CT scan (Visible lymph nodes in the mediastinum . probable benign reactive appearance)

            28/07/17 AFP 35 (normal 7), relapsed confirmed
            04/08/17 CT scan (new metastatic para-aortic lymph node 1.6cm AP1.5cm)
            10/08/17 Start 3 BEP, AFP201 (normal 7)
            06/10/17 End of 3 BEP, AFP2 (normal7)
            17/10/17 CT scan

            Comment


            • #7
              Hello Ben,

              I was recently diagnosed with stage 1B pure embryonal carcinoma. Since the chance of recurrence is high and the fact that the report says pT2 makes me think that's what you've got as well, and they also found a 3mm nodule in my left lung. What are the odds, hey? In my case they seem to think the chance of recurrence is ~50%, so I've decided to go for 1xBEP, starting in 1-3 weeks.
              I got my first CT one week after my I/O (August 23rd), and my latest one was just under two weeks ago. The nodule could be seen in both CTs, but it doesn't appear to have grown, and my doctors think it's more than likely to be benign. IIRC a benign nodule can be seen in 1/500 CT/x-ray scans, so I'm REALLY hoping that's the case for you as well!

              I'm sorry you have to be here, but you've come to the right place!

              Comment


              • #8
                Pure embryonal is extremely sensitive to chemo, so if you go surveillance and relapse you'll be fine in the end. I had pure EC and by the time I caught it I had a Lymph node at 1.9 cm. Dr. Einhorn told me close to 100% chemo alone cures it, so if you were to go surveillance and relapse I'd imagine your cure rate would be the same. I've seen people go with RPLND with pure EC and still relapse but haven't seen it really with chemo in early stages like you, but the choice is yours.
                3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT scan clear, AFP was 19. 8/16/17 AFP drops to 10. Doctor pleased ALL CLEAR!

                Comment


                • #9
                  Sir Lurkington, what a coincidence with the 3mm module. I'm hoping it's just something benign. Waiting to see the oncologist has been the longest week of my life. I've been getting calmer as the days go by (wife sits me down and gives me reassurance and also tells me to stop googling things that aren't back by empirical evidence). This forum helps as well, the more posts I read with people similar to my situation. Thanks for all your input and good luck with your chemo.

                  Comment


                  • #10
                    Dcalandreli, I hear pure EC is extremely sensitive to chemo. Depending on what the oncologist says on Monday, when I meet him for the first time. Would it be smart to do the preventative chemo or wait till it relapses to do the full blown chemo? Also, how would one get a hold of Dr. Einhorn? Thanks
                    Last edited by birby84; 10-12-17, 12:47 PM.

                    Comment


                    • #11
                      EC family here as well. You can fine Dr Einhorn's email on the Indiania University website. Just google his name. He's the #1 authority on TC in the world and super responsive. Waiting for it to relapse isn't going to harm your chances at recovery. You mentioned you already have two kids. If I was done having kids and one round of BEP was on the table, I'd take it. The concern is that it can leave you sterile so I decided to wait until relapse before being forced to bank sperm and go that route. It did and I'm just wrapping up the first round of BEP with no adverse affects to my quality of life. If I could be done right here and not have two more rounds, I'd thank my lucky stars call it a day. At the end of the day, you're not putting yourself at a greater risk by waiting. Just know that all of your options are on the tier of "when" this cures you, not "if." Be confident. You're going to be fine.

                      Comment


                      • #12
                        I met with an oncologist yesterday, they took my blood, I don't know any tumor marker results he went over about the CT scan saying everything looked except there was a 3 mm pulmonary nodule on the left lung. The oncologist doesn't know if this nodule is cancer or not. He staged me as Stage1b provided the nodule on lung isn't cancerous. He suggests to go ahead and start with 2XBEP and do a CT scan after the first round to see if the nodule clears, if it clears then he would add on the additional round of BEP. He wants to start this chemo next Monday. The whole meeting felt rushed and I don't feel I asked all the "right" questions. We have a family trip coming up on 10/29/2017 to 11/5/2017 that we have been planning for a year and a half and would like to go if possible. This oncologist strongly suggests that we go ahead and start chemo right away next Monday, and didn't suggest to bank any sperm for the future. I also have to get a root canal done this Friday, I'm not sure if that's enough time to heal from. Do you think I could start preventive chemo on 11/6/2017, or is that too late for preventive measures?

                        Comment


                        • #13
                          That sounds like a good plan. Seems pretty early regardless so 2 or 3x BEP should be very effective in either cure or stopping a relapse.
                          3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT scan clear, AFP was 19. 8/16/17 AFP drops to 10. Doctor pleased ALL CLEAR!

                          Comment


                          • #14
                            I emailed Dr. Einhorn and this is what he responded with:

                            These are long and complicated discussions. We would never recommend BEP X 2 . With embryonal cell CA and presumably normal markers , abdominal CT scan and a 3 mm lung nodule that is PROBABLY nothing, would consider this stage I disease but with a 50% chance you have microscopic disease I would recommend surveillance. If you relapse you would then need BEP X 3 . Either way, overall cure rate should be 99-100% .

                            He replied within the same day, even though his was out of the office for the week. Iím thinking about going on surveillance at least another few weeks. I still havenít got the blood work back from Mondayís visit. Do another CT scan in a few weeks and see where we are at.

                            Comment


                            • #15
                              Hi! Sorry you are able to post here. If tumor markers are still normal, than you can go with surveillance. I would NOT be scared of RPLND. Chemo is a lot harder than the surgery, ask anyone who has had both. The surveillance is great if you can handle the frequent testing and if you handle anxiety well. Some go 5 years with all clears on blood work, and CT Scans. The truth is that if you are monitored and something pops up, usually chemo will work well.
                              I would at least check into RPLND if your markers are normal and upcoming CT is normal. Dr. E is wonderful. If you decide to have RPLND traveling to IU or John Hopkins is a good idea. However, Dr. Bedford Waters in Knoxville, TN did a stellar job on my son who was 17 at time of post chemo RPLND.
                              17 year old son Grant dx 12/21/16
                              pre/o markers 12/21/16- HCG:1065.15,AFP:298.8,LDH:1119
                              pre/o CT Scan 12/22/16 normal
                              r/o 12/22/16
                              Post r/o Elevated Markers with INCREASE 4 weeks post r/o;
                              PATHLOGY: mixed maligent germ cell 8.6 x 6.2 x 5.9 cm

                              -80% Embryonal, 10% Yolk Sac, 5% Teratoma, 5% Choriocarcinoma w/LVI within Spermatic Cord and invasion into Rete Testis
                              2nd CT scan on 1/24/17 3 nodes 2 over 2.5, one over 3.5
                              BEP x 3 1/27/17
                              Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
                              2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
                              Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.

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